Cascade

Here's a post about effects and side-effects, and remedies and solutions. 

I have ongoing chronic pain in my right side, all around my hepatectomy scar (liver removal; keep up).

The pain starts in my back, probably because I had back pain long before I had cancer.

I also have pain in my shoulder which may or may not be referred from my diaphragm (a wiring anomaly that doctors know about and adds to their smugness).

I have been managing this pain in various ways, depending on how much it freaks me out on any given day. 

In the absence of any new or ongoing treatment for the actual cancer I think I started to miss being a patient, so I decided to go and see about having my pain "managed". Usually this would involve drugs, but I am one of those extremely irritating patients who refuses to take tablets and believes in Other Options (No angel therapy. Yet). So I plumped for an epidural injection into my spine cos like that's so natural and wholesome. 

I think it might have worked. The two hours spent in the public waiting room watching HSE propaganda was well worth it anyway. I learned about all sorts of public health promotion stuff that my employer - sorry, Statutory-Body-With-Whom-I-Share-A-Contract-But-Who-Has-No-Obligations-To-My-Wellbeing-Or-Occupational-Safety - is funding and disseminating, and got to see lots of my friends in clever patient-safety videos and advice clips. 

I also signed up for a Mindfulness-Based Stress Reduction programme for people with secondary cancer. Now we're talking wholesome. 
Because I have the temerity to be a working cancerhead, I had to jiggle around my surgery hours to allow me to go along to the course in the middle of a Wednesday morning. This meant I arrived on the first day after an hour of helping a patient with chronic enduring mental illness deal with his most recent bout of paranoia. I was in my work clothes and in my work headspace. It took me a while to settle in, and the urge to jump out of the beautiful Georgian window was overwhelming. But I stuck with it, and made it to the Body Scan part, and had a good snore for ten minutes. 
And, what do you know, I felt all sorts of better on my way back to find out if my patient had chosen to go quietly or via the Retrieval Team...

The stress of the Dying/Not Dying Black Hole of Uncertainty has resulted in my teeth-grinding habit reaching new levels of viciousness, such that I managed to crack one of my molars right down the middle a couple of months ago. The dentist had offered me the choice of root canal surgery or extraction, and really the only part that I listened to, while he explained the pros and cons, was the One Thousand Euros versus One Hundred Euros bit. He also used some line about "we're all living longer and like to keep all our teeth for as long as possible", so that kind of sealed the deal for me. There was also the salient matter of me never having had a tooth out before, therefore stupidly assuming it would be easy peasy. 

I put off having it done for a while, because I was organising a conference and making myself feel indispensable. As soon as I was dispensable again, I booked myself in, but chickened out again at the last minute because I was going to be single-parenting that evening and instinct told me I may need back up if it all went pear-shaped. 

Good old instinct. When I went to the rescheduled appointment it did, indeed, all go pear-shaped. It felt like he was removing my symphysis pubis via my mouth. He pulled and pulled and yanked and wiggled and heaved and splintered and drilled and wrenched. And little fragments of my tooth pinged into the steel bowl, and off the overhead light, and across the room. Tears were streaming down my face and I could feel myself getting the all-over body shakes that I remember after having my sections, but without the lovely oxytocin rush. I didn't even manage to deliver the tooth. The fecker is still in there now, crushed and broken, but clinging onto my mandible like a tumour to a portal vein. 

Now I have to go to the root canal surgeon. And presumably pay her a thousand euros. 

Go Go Go

I'm doing that thing again. The busy busy busy run run run thing.

I don't remember if I did it much before I got cancer, but I certainly can't seem to get away from it now.

I am working hard when I am at work - it is busy season in GPland and there is no way around that. 
I am working hard when I am at home - the red carpet on the stairs does not clean itself, it seems. 
I am frantically trying to ensure that enough people come to the conference I am organising that it feels like a proper success, not just a job done (I really wish I hadn't watched that Fyre Festival documentary).

There is always a point where my body reacts physically to the mental overload and I think oops I've pushed it too hard this time. Pains in the head, pains in the stomach, pains in the chest. But then they pass, and I find my mind wandering off down the dark alleyways of What Makes You Think You'll Survive When So Many Don't, and I scuttle back to the pandemonium of ordering nametags and counting seats and emailing people I barely know to ask for help. It's safer for my brain to be bursting at the seams with the here and now stuff and ignoring the future altogether.

I like the busy-ness and I am dreading the come-down. 

But I would still very much like lots of people to come to my conference!

www.wimin.ie/conference

Strength and Dignity

The following post has been published in the 7/2/2019 edition of the Medical Independent.

I have started to give tutorials to our Final Meds again. I had stopped when the chemo frazzled my little brain cells to the point where remembering my own name was sometimes a struggle. But now I feel I can bestow the unsuspecting students with my vast knowledge, as long as I stick to just one tutorial per month, and with the scintillating topic of Me and My Illness.

I use my experience to illustrate a few teaching points, like breaking bad news, false assumptions about cancer and its treatment, and self-care. On this last point, I always urge them to ensure they have their own GP and to avoid treating themselves or their relatives once the magic medical council registration number is attached to their name. 

Sometimes they ask me about how my own bad news was broken to me, or about my own GP. The are curious to know if the SPIKES model was used (which seems to me to be a particularly inappropriate mnemonic).

This has been the most difficult part of these tutorials for me, much more difficult than describing the pain or misery of cancer and its treatment. 

It is difficult because my GP had to give me the news of my devastating diagnosis over the phone, when the radiologist phoned her late one Thursday evening to say that my MRI showed multiple liver metastases with an unknown primary. She knew that I knew what this meant. When I saw her number coming up on the phone I knew it was probably serious, but when she told me to sit down before she said anything else my head started spinning and my mouth went dry. She told me about the mets, then she told me to be at the hospital at 8:30 the next morning and the radiologist would meet me there. The oncologist was already lined up too, and perhaps a surgeon as well. She told me she would phone me back in half an hour, once I had told my husband, and she said she would talk to him too. 

As I was about to hang up I asked one more question - “are we really having this conversation?” She just said, yes. This is really happening. 

It was nearly a year later before I was able to fully understand how difficult that whole experience must have been for her. In the few days before I had had the MRI, we both knew that my liver function tests had suddenly gone up dramatically and that something was probably fairly amiss. But neither of us was prepared for what was to come. I have no idea how she was able to pick up the phone to me that afternoon, knowing that what she was about to say would be so life-changing, and possibly life-ending. She had obviously been to a lot of trouble contacting various hospital consultants before she even contacted me, so that a smooth plan was in place before I could even begin to think about what the next steps should be. 

She helped me through the excruciating uncertainty of the next few months. I would go to her with aches and pains which to me meant certain imminent death, and she would calmly and firmly diagnose something much less dramatic. She was always knew the right thing to say. 

I brought her a bottle of champagne for Christmas two years after my diagnosis. She wasn’t able to drink it, as she had started to have difficulty swallowing in the previous weeks. She told me some of her symptoms, and we both came up with non-life-threatening differentials, just as we had done when my original liver ultrasound was a bit iffy. And once again, our hoping-against-hope proved pointless, when she was finally diagnosed with motor neurone disease. 

Her speech started failing, so we communicated electronically. We knew each other so well that we didn’t really need to say that much anyway. One hand started getting weaker, but she was still able to take blood from my two-year-old whose growth was faltering, and the injection she gave me in my right shoulder saved me a trip to the orthopaedic surgeon. We had email chats about the pros and cons of various life assurance policies. 

Her funeral was without doubt the most beautiful and most agonising experience of my life so far. It was an almost exact replica of the funeral I have already planned for myself (except mine would be much more about Me Me Me, and hers was all about everyone else). Her daughter described her as never having a bad word to say about anyone. I know that it would be hard for someone to say the same about me, but I vowed to myself at that moment that I would try my best to emulate her. She was a truly amazing person and I will never forget her. 

RIP Dr Orla Batt.